For Chloe Saxby, navigating your average primary school playground can be a minefield. Due to her rare condition, a stray soccer ball, hot temperatures or a schoolyard-spread infection can cause irreparable damage to the Woonona East Primary School student. The year 1 youngster is one of only four people in Australia diagnosed with Vanishing White Matter Syndrome, which causes certain triggers like a bump to the head or a high temperature to turn parts of the white matter of her brain to liquid. Woonona East Public School commemorated Rare Disease Day on Friday to raise awareness for Chloe and others suffering rare diseases that don't have a large amount of research or cures available. Her mum, Nyree, maintained that despite Chloe's confinement to a wheelchair and her fragile state, she was the school's "social butterfly". "She always gets a rock star welcome, all the kids know her name," she said. Despite the risks of young children not comprehending Chloe's condition, Mrs Saxby said the school's pupils had been more than understanding. "Everyone at the school has been so welcoming, they put things in the newsletter reminding people to tell the school of infections and the kids have been great since Chloe's first year at kindergarten." Since Chloe's diagnosis, the Saxby family's life has changed dramatically. "I don't recognise my life before then, we've had to sell the car and our house and we can't do a lot of things like we used to like go to the beach," she said. The Saxby family is holding a fundraiser barbecue for rare disease research at North Wollongong Bunnings on March 8, from 8.30 am.

Chloe gets rock star's welcome at school

For Chloe Saxby, navigating your average primary school playground can be a minefield.

Due to her rare condition, a stray soccer ball, hot temperatures or a schoolyard-spread infection can cause irreparable damage to the Woonona East Primary School student.

The year 1 youngster is one of only four people in Australia diagnosed with Vanishing White Matter Syndrome, which causes certain triggers like a bump to the head or a high temperature to turn parts of the white matter of her brain to liquid.

Woonona East Public School commemorated Rare Disease Day on Friday to raise awareness for Chloe and others suffering rare diseases that don't have a large amount of research or cures available.

Her mum, Nyree, maintained that despite Chloe's confinement to a wheelchair and her fragile state, she was the school's "social butterfly".

"She always gets a rock star welcome, all the kids know her name," she said.

Despite the risks of young children not comprehending Chloe's condition, Mrs Saxby said the school's pupils had been more than understanding.

"Everyone at the school has been so welcoming, they put things in the newsletter reminding people to tell the school of infections and the kids have been great since Chloe's first year at kindergarten."

Since Chloe's diagnosis, the Saxby family's life has changed dramatically.

"I don't recognise my life before then, we've had to sell the car and our house and we can't do a lot of things like we used to like go to the beach," she said.

The Saxby family is holding a fundraiser barbecue for rare disease research at North Wollongong Bunnings on March 8, from 8.30 am.